World Prematurity Day: "This is confronting. This is our baby."

In May this year, we published Shelly’s story. We called it “one of the most raw, most honest pieces we’ve ever published on Mamamia.”

Because it was.

Shelly lives in rural South Australia with her husband, Dan, and her two children, Lara and Archie. Archie was born premature, and taken by the Royal Flying Doctor Service to a hospital in the big smoke to receive treatment.

Today, on World Prematurity Day, Shelly has written for us once again, candidly detailing what it is like to have a child born premature.

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It’s late in the evening. I have been waiting impatiently since the previous morning for this moment, but as the nurse Emma pushes my wheelchair out of the third floor lift and to the entrance of the Neonatal Intensive Care Unit I suddenly feel apprehensive, unsure if I want to go in.

The nurse enters the security code allowing the large doors to open and I look up at Dan and sense he feels the same as I do. The initial excitement of finally being here with our baby is taken over by uncertainty, a feeling that has engulfed us over the last two days.

The nurse leads us to a wash room where we have to scrub our hands before we can go any further. Again I look at Dan, hoping to share his strength, he squeezes my hand almost as though he is reading my thoughts. We continue down a corridor and I can’t help but notice the large photos that cover the walls. Faces of happy toddlers stare back at me and alongside each one is a photo of that same child as a newborn. Tiny fragile skeletons are covered by transparent skin.

These babies are clearly not supposed to be in the world yet. I swallow hard trying not to let the enormity of the situation overwhelm me.

We enter through another secure door and into a large, well lit room. There are three humidicribs spaced out along each side wall. I wonder which of these six plastic boxes holds my little boy.

I wouldn’t know by looking at their contents for I don’t know what my baby looks like. I have seen him only briefly as the Flying Doctors were taking him away and any hope of seeing his face was hindered by the breathing equipment, tubes and wires that covered his tiny face and body.

The room is quiet except for a male voice coming from the far side. I look over to see a man sitting in an armchair next to a humidicrib which is covered by a pink blanket. He is reading a story aloud to who I assume is his daughter. I wonder how many hours have been spent in that armchair.

I wonder how many nights he has had to walk out of these doors and leave his baby behind.

The NICU nurse standing by the crib closest to the entrance looks up and smiles. Emma pushes my wheelchair over to her and stops in front of the crib which is partially covered by a green blanket with a koala on it. The small piece of paper on the side reads ‘Baby of Murdoch’.

I push my hands into the arms of the wheelchair and attempt to stand. I’m still light headed and uneasy on my feet and I end up back on my bum. I brace myself to stand again as Dan holds my arms to help me up.  I give up the fight to remain composed, I cannot contain my tears any longer. I allow myself to cry openly in his arms, a scene I’m sure is not unfamiliar in this place.

Our little boy is naked except for a newborn nappy which goes half way up his torso. He is lying on his belly and I can see that his back and shoulders are covered in lots of fine hair. The CPAP machine which is helping him breathe covers his little face and the prongs in his nostrils seem to distort the shape of his nose. He also has a feeding tube going into one of his nostrils which is taped to the side of his face. A board is bandaged around most of his right arm to disable his wrist and keep his drip in place. Wires trail out from underneath him, out of the crib and into a monitor on the wall.

The nurse begins to explain his care and the purpose of each thing attached to his body. I instantly feel extreme gratitude for her but strangely at the same time can’t help but feel envious that this stranger knows more about my baby than I do.

He is being given antibiotics intravenously as a preventative measure against infection. Caffeine is also administered to him to stimulate his brain and remind his body to breathe. His nappy has a number written on it in black texta, the nurse explains this is its dry weight. It will be weighed again when it is changed. Each millilitre and gram is scrutinised as a measure of his health. He is unable to regulate his own body temperature and the digital reading on his crib reads 30 degrees Celsius.

Just as I’m trying to understand the readings on his monitor an alarm sounds signalling something is not right. I’m instantly scared and can’t help but feel panicked. I watch the nurse as she calmly makes adjustments to his CPAP, reassured by her manner. I sit back down in the wheelchair still holding onto Dan’s hand tightly. This is confronting.

This is our baby.

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Postscript: 

During my second pregnancy I found myself re-reading books I had retrieved from the back of the bookshelf and dusted off with ever-increasingly chubby fingers. Amongst the pile of books was Kaz Cooke’s week by week pregnancy guide, Up The Duff.

My bookmark is still nestled firmly in the pages of chapter 32.

That is where my pregnancy ended.

There was never a single part of me that thought I would not make it to chapter 40. Premature birth was something I never considered happening to me. I now know premature birth affects 25,000 babies every year in Australia, with 1000 of those losing their fight for life.

Our family were fortunate enough to be one of the statistics who got to bring their baby home.

Our baby boy Archie spent the first month of his life in hospital. His strength, health and rapid weight gain resulted in a hospital stay much shorter than his doctors initially predicted. We watched him grow through the transparency of a plastic womb.

Breastfeeding took on a whole new meaning and I became well acquainted with a breast pump. A three-hourly alarm, day and night, signaled it was time to visit the ‘dairy’. A beeping alarm during the night was certainly harder to respond to than a crying baby would have been.

We temporarily lived in the city, 450 kilometres away from family and friends and more heartbreakingly away from our two and a half year old daughter.  Someone had the nerve to a likened this time to a honeymoon, a month away from home without any kids. Those comments were the catalyst to my realisation of the ignorance of some. NICU is often described as being a roller coaster, and let me tell you, that’s not a ride I would willingly line up for again. The physical, mental, financial and emotional toll was exhausting and overwhelming.

Archie is now 17 months old. He is healthy, chubby and cheeky. He is like a non-stop eating tornado of love. My lifetime allowance of luck rolled into an adventurous toddler who shows no ill effects of his premature birth.

For many families the consequences of prematurity last a life-time.  Their rollercoaster has stopped but they are unable to get off, disabilities mean their ride lasts forever.

November 17^th is World Prematurity Day. A day dedicated to raising awareness to the 15 million babies born pre-term around the world every year, many of which the causes remain unknown.

For me, the day represents an opportunity to reflect on how fortunate we are in Australia to have access to hospitals equipped with the latest lifesaving medical technology. We live in a country capable of replicating Mother Nature, we have the amazing ability to continue growing a human being outside the womb.  It is because of these things that my family of three were able to become four. In many places around the world this is not the case.

Today, think of the one in ten babies who will enter the world pre-term.

Today, think of those babies who entered the world but didn’t get the chance to stay.

Shelly lives in country SA with her husband and 2 gorgeous children. Her days are spent spread between being a stay at home mum, a part time administration officer and a volunteer for Miracle Babies Foundation. Miracle Babies Foundation is Australia’s leading organisation supporting premature and sick newborns, their families and the hospitals that care for them. You can find their website here.